Survival Tips
Strict Adherence to Sleeping Position
The importance of getting the sleeping position correct, and adhering to it, cannot be emphasized enough. Even short lapses (e.g., 30 minutes or even less) into positions which leave the cervical spine unsupported or lumbar spine locked in hyperextension will lead to nerve irritation.
For sleeping on the back, use a thin pillow rolled up at one end such that the roll is placed under the neck. Place several pillows under the knees so they are elevated (at least 2 pillows deep, preferably three).
For sleeping on the side, it is helpful to understand why the specific arrangement is used. To re-iterate information given in the handouts: Humans have broad, high shoulders. This means the neck is unsupported between the head and the shoulders, and thus sags during sleep causing injury. A shaped neck-support pillow is necessary. However, the high shoulder blocks access of the pillow to the key site. So, the trunk must be elevated by another pillow, and the lower arm placed behind the back. Then the shaped pillow will have access to the key site. Sometimes a pillow placed under the hips prevents the spine from twisting, as shown in the handouts. Finally, a pillow is placed between the knees. Another pillow to hug can also add further comfort.
Patients should make spine-mechanics an integral part of their life. For example, when watching television, attention must be paid to whether the spine is being allowed to lean into the sway-back position, or whether lying on the couch is allowing the cervical spine to sag. Is the back locked in hyperextension? All walking should be done in the "power-walk" position - leaning forward with gut sucked-in. Correcting these injuries of the spine, and further, allowing the brain to forget these injuries, takes relentless focus and dedication.
Failure to resolve the Fibromyalgia condition is invariably caused by either another confounding medical condition, or patient non-compliance. By far, the latter is most common.
Because of the long period of time required for Fibromyalgia to resolve after the patient begins applying the principles discussed in the Etiology of Fibromyalgia section, it is helpful to review some things that can be done to make the recovery period more comfortable.
Irritable Bowel Syndrome
Since Fibromyalgia is a pain sensitization condition, sufferers experience exaggerated responses to otherwise ordinary stimuli. These stimuli include various foods.
As already discussed in the Etiology of Fibromyalgia section, alcohol and caffeine should be strictly avoided as these drugs affect areas of the brain already perturbed by the Fibromyalgia condition. Even "decaffeinated" coffee contains amounts of caffeine that can be a problem.
There are other foods that are normally mild irritants that can become strongly irritating for Fibromyalgia patients. Foods that contain large amounts of sugar (soda, candy, etc.) should be avoided, as well as spicy foods.
Also, much lesser known, is that gluten can be a strong irritant to Fibromyalgia sufferers. Gluten is a protein found in wheat, barley, rye, and oats (although, apparently oats don't naturally contain gluten, but tend to be contaminated from other sources). People with an autoimmune disfunction called Celiac Disease cannot eat gluten for entirely different reasons than people with Fibromyalgia. However, there are many Celiac support groups that can provide advice on gluten-free diets. Patients must ensure that Celiac disease is not present, and so they should discuss this with their doctor before attempting the gluten-free diet.
Gluten is quite pervasive and difficult to avoid. For example, icing sugar often contains wheat flour, and peanut butter usually contains icing sugar. Soy sauce also usually contains wheat. Often the presence of wheat is not explicitly stated in the list of ingredients, so the best practice is to phone the manufacturer prior to eating the product. Celiac patients use this method of avoiding gluten. Once the Fibromyalgia condition has resolved, gluten will be tolerated again. It can be helpful to make batches of food that will last a few days, rather than cooking one day at a time, since planning the purchase and stocking of gluten-free food can be challenging.
Since radial distention of the intestines is very painful for Fibromyalgia sufferers, and since any food passing through the gut will be somewhat irritating, it is recommended to drink plenty of water throughout the day.
People with IBS sometimes develop lactose intolerance. Usually, if the intolerance developed coincident with the IBS, their tolerance to lactose will return after the IBS resolves.
Temporomandibular Joint Disorder (TMJ)
Until the Fibromyalgia condition is resolved, TMJ can cause constant jaw and neck aches, and can contribute to headaches. The standard solution to TMJ is to obtain a dental splint made by a dentist. This is essentially a plastic or rubber bite-plate that is used at night. It will relieve the stress on the TM joint, prevent the teeth from grinding, and alleviate the aching in the jaw.
What to Tell Other People
Because of the unfortunate stigma associated with Fibromyalgia, patients should be careful who they tell about their condition. This stigma stems from incorrect studies stating that the cause of Fibromyalgia is psychological disturbance, exacerbated by the use of anti-depressants to treat it, as well as the lack of any visible signs of malady.
As discussed in the Etiology of Fibromyalgia section, the root cause of Fibromyalgia is related to mechanics of the spine, and in particular, the cervical and lower lumbar spine. So, a true and reasonable explanation to give to others is, "Oh, I have a neck problem.", or, "It's just back problems."
The gluten-free diet can be justified with irritable bowel, a commonly accepted syndrome.
The Power Walk Position
As discussed in the Etiology of Fibromyalgia section, any walking should be done in the "power walk" position - leaning forward, bent at the waist, with gut sucked in. However, this can look rather odd. One way to make it look a bit more natural is to carry a knapsack or large bag over the shoulder.
Avoiding Quackery
Because the etiology of Fibromyalgia is not well known, the world is rife with quacky (questionable) herbs, potions, devices, and cures. When you encounter such things, one useful resource is Quackwatch.org, which lists many known medical frauds and scams. A good way to see if Quackwatch has information on a subject is to search Yahoo or Google for "Quackwatch keyword" where the keyword is the product or subject in question.
Miscellaneous
Since Fibromyalgia patients have trouble getting restorative sleep, it is tempting to take melatonin in an attempt to improve quality of sleep. However, as discussed in the Etiology of Fibromyalgia section, the condition involves significant disturbance to the hypothalamic-pituitary-adrenal system, and melatonin supplements will aggravate this disturbance and so should be strictly avoided.
Heat, massage, traction, and counter-irritant therapies (transcutaneous electrical nerve stimulation (TENS), accupuncture, liniments) can help with the chronic pain and are not necessarily discouraged, but don't address the causes. However, significant amounts of money can be spent on them and caution should be used with therapies that are intrusive (TENS, accupuncture). Heat and massage are most preferable.
This page last updated September 8, 2003